Have you ever had pain?
I don’t mean a headache, or even a broken leg. I mean long-term, unrelenting chronic pain. ‘Chronic’ typically means pain that lasts more than six months, and is generally past the point you’d have expected to heal. It doesn’t mean it’s psychosomatic. It could be an injury that keeps recurring, something that has healed incorrectly, or you have a condition that causes constant pain. Acute pain doesn’t mean the pain is worse, it simply means that the pain has lasted a short period of time. You can have pain at different levels of intensity – whether chronic or acute.
Before I had chronic pain myself, and for a long time after, I believed there were painkillers that could stop it. However, for the vast majority of people this isn’t the case. I won’t say there isn’t anyone who has found a painkiller that takes all their pain away, but for most people the best they can hope for is a reduction in pain levels. Something that turns down the dial, as it were.
Pain medication is a complicated area with no one-size-fits-all approach. There are lots of different types of painkillers, such as those that reduce inflammation, medications that work on nerves, antidepressants that also help with pain, and opioids which bind to specific receptors in the body . Further within the types of medications are even more options. It can have an immediate or slow release effect. You can take it by pills, patches, topical application, liquid, under your tongue, injection, and so on.
Once someone has exhausted the over-the-counter options, it can be a difficult decision to go to the doctor to ask for something different. It shouldn’t be. Pain deserves to be managed as well as any other symptom of a condition, but there seems to be far more judgement intrinsically linked. Perhaps it’s due to the fact pain is invisible, or maybe because it’s hard to comprehend the impact of when pain becomes chronic. Those feelings of judgement can also be internalised – that you’re not the type of person to pop a pill. That other people manage without. That it’s not healthy.
I remember once having an assessment by a Physiotherapist. In my area, they have something called a Spinal Pathway, so anyone wanting to see a doctor to have treatment for back pain has to be assessed by a Physiotherapist first. My GP had referred me as she felt an appropriate course of action was to see a consultant to discuss having some joint injections into my spine. After talking to me for a couple of minutes, the physiotherapist declined my request. I asked why, and he responded, “You don’t seem to be screaming out in pain for them.”
I could only sit there in disbelief. Pain is subjective, and very often when you have chronic pain, the amount of pain you’re in doesn’t show on the outside. If someone healthy woke up with the level of pain I live with on a daily basis, they’d be straight into Accident & Emergency begging for help. The fact that I’m not crying or screaming, and may even be upbeat and smiling is not because I’m brave, or special, or have amazing pain tolerance – it’s just that I’ve been in pain for 13 years straight this July. You have to learn to live with it to some degree, as there’s no other choice. A certain amount of pain becomes normal. That’s not to say I don’t have bad days, or that I don’t ever cry, or that the level of pain regularly jumps above the threshold I can cope with. It does, but I usually don’t go out on those days if I can help it.
Seeking help for pain relief with medical professionals always carries some risk, that somehow you may receive the dreaded drug seeker label. It happens all the time, to completely innocent people who are just trying their best to manage their pain, and have no interest in abusing the medication. The problem is your GP sees you for around ten minutes at a time, and for me I often have telephone appointments as I don’t have the energy to get to the surgery – so she can’t even see me. My GP is very nice, but she’s perfunctory and to the point. We look at medications and their dosages and side effects. She’s never asked me, How does your pain impact you? What help do you need? What does a normal day feel like for you? It’s likely because those ten minutes are ticking past, she’s already an hour late and has a room full of patients waiting. I understand the reasons why, but it’s hard for her to then build a true picture of my life. It would be very easy for her to see me sitting next to her, dressed and holding it together and wonder if it’s as bad as I say without that vital background of how long it took to dress, what help I needed and how long I will need to sleep when I’ve got home from the appointment to recover.
If someone has asthma, diabetes or a high blood pressure – there are tests to back-up what they’re saying. An asthmatic can blow into a Peak Flow Metre to show their inhalers aren’t strong enough, but chronic pain patients only have their words, their actions and the hope that the doctor will understand. It’s so easy to say the wrong thing that stops the doctor from understanding, and make them doubt you. But would a doctor judge an asthmatic who needs a stronger inhaler? Would their character or appearance even come into it?
My pain has been pretty uncontrollable lately. In some ways I’ve wiped out months of my life by changing to the wrong medication. So many plans went out the window at a moment’s notice. Frustratingly, I was undoing months of progress of physiotherapy.
Pain relief can be one step forward, and a marathon back.
Then I got myself into quite the quandary. I found a medication that worked really, really well. But only for a little while, and then the bad days were horrendous. My doctor was happy to keep increasing to keep those good days, but I always knew the bad days were coming. And they were so far above my normal threshold of pain, I couldn’t even begin to explain. But it was so hard to give those good days up – the days where I could function for longer than normal and even be productive.
I then had to make the decision to leave those days behind. I had to. I could have kept increasing the strength, but when would it end? I’m in my 20s – I have years and years of pain relief ahead of me. If I max it out now, where the hell would I be in my 30s, 40s, 50s and beyond?
With every medication you take, you have to weigh up more than whether it helps, but also look at:
- Are the side effects bearable? Are you taking six different medications just to counteract the side-effects?
- Your tolerance levels. Are you constantly having to increase the dose because your body gets used to it?
- Your levels of functioning. Some of the best forms of pain relief make you incredibly drowsy, or make you feel ‘out of it’. That might be fine to have a little break, but if you want to leave the house, you need to find somewhere in-between.
- Can you access it? Not every medication is available in every country, some are through consultants or specialists only.
- The relief you get. Taking all the above into account, is it worth it?
Living with chronic pain can feel like you have multiple spinning plates that you have to keep in the air. One falls, and the medication isn’t any good. Then, when you finally get a level of pain relief you can live with, someone throws a spanner in the works, such as this morning when my GP phoned me to say the new pain medication I have been put on has just been ‘red-listed’ meaning only secondary-care (consultants) can now prescribe it.
It’s frustrating and exhausting trying to keep all those plates up. It’s important to remember however, that this is not a sprint or a marathon, it’s a long-term balancing act.
Credit to Kurhan
Yesterday I went to London to see Dr Hakim, one of the top specialists in Britain for Ehlers-Danlos Syndrome.
I was nervous when I got there – I always am before I see a consultant, due to many, many bad experiences. However he immediately put me at ease, and was a nice, approachable person.
I’d made a list of problems I wanted to talk about, and he made a note of them and went through each in turn giving me ideas and suggestions of particular treatments or medications I could try.
He said in terms of exercise I was doing everything right, and everything I could. This meant a lot, as I’ve had medical professionals be so judgmental with no understanding of how hard it is to do the ‘little’ I do without putting myself in bed for weeks. I told him what one Pain Consultant had said – that I should be exercising six times a day. He said it was such an easy thing to say, and proved how little he knows.
We spoke about my Physiotherapist Leon Stephens at Sudbury Physiotherapy Centre who specialises in Hypermobility, and has been great, and Dr Hakim knew of him, which was good.
At some point this year I need to renew my Employment and Support Allowance, and in the next couple of years my indefinite Disability Living Allowance award will be changed over to the replacement – Personal Independence Payment (PIP). I’m terrified about both of these, as are most disabled people in the country who currently rely on them – or may need them in the future – to survive. I never know how people may react to something like that, due all the ‘scroungers’ rhetoric in the media, that has been picked up by so many.
Since I received my diagnosis letter in 2011 – I haven’t had a decent letter from a consultant that I could use as medical evidence. I’ve seen lots of consultants, but letters are generally of the “Treatment x didn’t work, been discharged” variety which won’t help much in terms of summarising where I’m currently at on the whole. I feared the lack of letters may go against me, as the Department of Work and Pensions will argue I can’t be that bad if I don’t see a consultant regularly.
Dr Hakim was very understanding of this, and we spoke at length about the PIP changeover, and he knew how hard it was on his patients. He said it’s obvious the reason I don’t have new evidence is because I’m doing the best I can at home to manage, but he would write an updated version for me to keep on file for when I need this.
This will take a huge worry away from me, so I’m thrilled.
He recommended that I take a multivitamin daily – he mentioned the Well Woman one, to make sure I’m topping up on anything that could be contributing to my levels of fatigue. He’s also going to ask my GP to check every blood test has been done, including the T3 Thyroid test that the NHS often miss out. He also suggested getting some Melatonin from the US, as well as suggesting some other sleep and pain medications I have yet to try that he’s going to suggest to my GP to look into (I can’t remember the name of them currently!) He also recommended some consultations in other fields that I could see if I continue to get nowhere locally.
He also suggested that anyone with POTs or autonomic dysfunction (including sleep problems) to drink an Isotonic drink called Nuun. He explained that they tell people like us to keep hydrated, so we drink water – but it actually make things worse as it dilutes the salt in our blood, so our kidneys then filter it and we pass it out with urine leaving things actually worse. (Or something like that!)
So he suggested drinking a salt isotonic drink which means that we are really hydrated, as drinking liquid with a similar salt content as our blood means it will do its job, rather than being filtered and disposed of straight away. Most of the similar products on the market i.e. sports drinks, Lucozade, etc are full of crap and sugar, so he suggests Nuun as it doesn’t add much else, just some flavouring. He suggested at a minimum to drink one before bed, and one as soon as you wake up, and this should stabilise some of those issues.
They are pretty expensive, but we only need half a tablet at a time, as the whole tablets are designed for athletes.
We also spoke about Prolotherapy, which is a new therapy I’m hearing a lot about recently, mostly from Americans, and I was interested in his thoughts. He said there was no evidence for it, and some of his patients had been made worse by it.
I found Dr Hakim very understanding, kind and obviously knowledgeable. All in all it was a great appointment – and when his letter arrives I will add anything helpful I’ve forgotten!
Professor Grahame retired from NHS patients some time ago, and is no longer taking on new private patients. I believe he may still have a private clinic for under 16s, but Dr Hakim is a perfect alternative.
By 2010 I’d seen a string of consultants over the years, but none had been able to tell me what was wrong. They’d all been appointments of around 15 minutes, a quick look at my spinal movement, a couple of questions , a shrug of their shoulders and a dismissal. I left each appointment feeling lost and disappointed.
A physiotherapist then mentioned I was very hypermobile, which then put me on a path of research into what that meant, the implications and I then came across the condition Ehlers-Danlos Syndrome which seemed to fit all my symptoms. I also found that one of the top specialists in the condition, Professor Rodney Grahame, was based at the University College Hospital London.
I then had quite a fight to get the referral, having to go through the PCT and Rheumatology department at my local hospital – but finally I was informed they were willing to refer me for a second opinion and I had the funding for it.
It took about six months until I saw Professor Grahame, in January 2011. I knew he was different when he began to put together a detailed overview from my birth to the current day. I was with him for over an hour – and he was very thorough and polite. He explained what was wrong with me, and some of the things I could try – including referrals to other specialists. I felt listened to, respected and finally had the answers I had been seeking for so long. He also followed my appointment up with a very detailed report that helped me secure further support from other sources.
I saw him again eighteen months later for a follow-up, where again he was very helpful, and enabled me to have further testing within weeks, that I’d been asking for locally for the past two years.
Sadly, Professor Grahame retired this year and it’s a massive setback for the Ehlers-Danlos Syndrome sufferers in the UK. There is a shocking lack of specialists and clinics in the UK – and Professor Grahame has been unfailing in his research and support. He changed the lives of so many families by finally being able to give answers to people sometimes after decades of uncertainty. He brought a particular kindness and expertise that many others lack.
He will be sorely missed at the UCHL, but I hope he enjoys his retirement!
I’ve just started with a new Osteopath. I’ve been through so many therapists that I try and get a recommendation from someone I know first – which I did with this osteo. But on my first visit he announced he was off to Asia until March, so could only see me one more time.
Today he assessed me further alongside the osteopath who I’ll be working with in the future.
He pointed out my arch has fallen, and my left foot is falling inwards – which pulls my knees automatically into hyperextension. He suggested this would be putting a lot of pressure on my lower back. He also pointed out my mid -spine area is very hypermobile, but my lower back is locked solid – also putting additional pressure on. My hamstrings are very tight, as is my sciatic nerve. So there’s a few things to start with.
Tomorrow I’m seeing a Pain Specialist at the Royal National Orthopaedic Hospital in Stanmore, Middlesex. The consultant isn’t an Ehlers-Danlos Syndrome specialist, but the EDS consultant at the hospital often refers to her, so she sees a lot of us.
I’ve been putting together some information on Ketamine or Lidocaine infusions to discuss with her, along with research on EDS-related sleep issues and hope to also be referred for Lumbar Facet Joint injections.
I get very nervous before I see a consultant, especially when I feel it’s a ‘last hope’ appointment. I’ve had some really bad experiences with the pain consultants at my local hospital, and I’m hoping seeing someone with an understanding of the complexities of EDS is going to make a difference.
I’ve also booked in for my flu jab for a couple of weeks. I dread them, but the thought of it is usually worse! So just a reminder for all of you who has to have one yearly – winter is coming!
A good GP is like gold dust.
It’s not that I believe the vast majority of doctors are bad doctors, it’s just that I think many have a specific attitude to healthcare. They want to see a patient, diagnose the problem, hand over a prescription and see them in a few years time for another issue.
However, when someone has a chronic illness – they’re obviously way past that point. There are no antibiotics for us, no treatment that will make it go away – and I think many doctors find that frustrating.
It takes a special kind of doctor to remain supportive and helpful in the long-term. To not give up as soon as one medication fails, or a treatment doesn’t work as suspected, or a medication helps one symptom – but creates another which now needs treating.
I have a check list of some of the qualities I like in a GP:
* A good doctor doesn’t roll their eyes when they ask how they can help, and you pull out a list. A good doctor realises for a chronically ill patient each symptom is connected, and shouldn’t be restricted into only discussing one problem at a time.
* A good doctor realises every symptom has significance. For example, the medication I am on for pain relief has unfortunately caused me to have acne. I find this really difficult, and I don’t want it dismissed as there are more ‘important’ issues.
* A good doctor doesn’t get frustrated when you come in clutching the latest breakthrough study, but reads it and explains whether it’s possible in my case or not.
* A good doctor let’s you cry when it’s all too much, and is thrilled for you when something goes well.
* A good doctor doesn’t dismiss a new symptom as just part of the condition, and carefully checks it first.
My GP is amazing. She has this special quality about her that you feel she truly cares about all her patients. She fights for us – will battle the system or a consultant when needed.
A GP to me is more important than a good consultant. They are really in charge of your care, your medication and the day-to-day stuff of your condition.
Unfortunately, a few months ago my GP informed me she was leaving the practice. I was, and still am, gutted.
I’ve been with the GP practice my whole life – but since I moved to the other side of town, and since the one GP at the surgery I like will be going, it made sense to move to one closer to home.
My GP highly recommended a specific doctor as best to treat my particular condition, but when I called them the receptionist informed me I was out of their catchment area by a road. When I told her though, she immediately picked up the phone and said not to worry, they owe her a favour and she’d cash in it. By the time I got home I’d had a call from their practice manager to say I was welcome to join the surgery.
Today I have my last ever appointment with her. I’ve got her a thank you gift, but I know there will be more tears!
Edit: There were tears from both us.
The letter from the Pain Clinic arrived today. Remember he’d agreed to say I needed massage treatment? It was the one silver lining of the appointment – so he can’t treat me, but at least I’ll hopefully get some help for massage?
HE DIDN’T WRITE IT.
Yeah, thanks. Helpful.
I then called his secretary, who asked him again about it for me. He came back (through her) to say he wouldn’t write that.
Credit to Catalin82
The day of seeing the Pain Clinic arrives. I have been researching latest treatments and I find one that seems really promising in terms of pain relief – infusions. I print off the latest studies to take with me.
I also take a list of medications/treatments tried and my diagnosis list. My mind usually goes blank when I’m asked, so it’s helpful to have to hand. My heart sinks a little when he asks about treatments I’ve tried – all the standard alternative and normal – physio/hydro etc and then follows up with ah, that’s a shame, you’ve tried everything I was going to suggest.
I want someone with flare! Imagination! Pain is unique and different for everyone, and if you can’t handle someone whose tried acupuncture already and found it unhelpful, then I’m going to struggle with that. So I bring him back to my main reason for referral – facet joint injections. My one last remaining hope.
But he, sadly, is not hopeful. He explains that normally they’d help (normally, normally – I hate that work. Normally surgery would work, normally treatment would work, but with you…) but because of my condition – my whole spine isn’t being held in place properly. If he injected the main site of pain, it’s highly likely that immediately the sites above and below would become the problem instead, so I’d want injections there, and then immediately the next sites would go… and so on.
I then ask about the infusions and he tells me they don’t do them there, and even if they did they wouldn’t be likely to do them to people with Ehlers-Danlos Syndrome as there’s so few of us. Right, so because it’s a highly undiagnosed condition – we deserve to be dismissed.
So my suggested treatment plan is upping my morphine patches until the highest dose possible. If I’m still in pain, then they’d look at the injections. Which will likely make me put on more weight.
The patches have added risks of fatigue, and messing with my hormones (i.e. increasing the acne I already have from using the patches.)
That’s it. That’s my whole treatment plan.
I then explain how helpful I find massage, but I’m worrying about how I will afford it when I finish work at the end of March. He agrees to write in my letter that I need massage as a treatment, which my GP should then be able to set up.
So, it seems this is my life. Painkillers on top of painkillers.
Credit to Kurhan
The next step in my quest for facet joint injections, is my GP. But this time when I tell her what I need, she hesitates. Normally she would send me to the local Pain Clinic, but she’s aware my opinion of the clinic is somewhere around… mud. And that’s being polite.
But there must be other pain clinics, right?
So she has a look on the system and it shows a few I can pick from. There’s a hospital nearby with a reasonably good reputation, and she agrees to send me there. She tells me she’d be really interested to know how I get on with them, as it would be great to have an alternative to send people to. Translation: she has issues with the local pain clinic too, but can’t say so.
I’ve been seeing the pain clinic for some years now, and I have to say the treatments/suggestions they offer haven’t changed a bit. The latest medications, research and techniques don’t seem to reach them, so I’ll be really interested to see what the new clinic has to say.
For so long now I’ve been trying to get an MRI, after my mobility vastly reduced over the past few years. Luckily my specialist consultant agreed, and asked my GP to get one done locally.
My GP told me it showed a few issues
- Limited marrow oedema (degeneration in the joint cartilage) in L2
- Moderate degenerative changes at L4/5 and L5/S1.
- Moderate sized disc bulge at L4/5 which along with ligamenta flava hypertrophy (enlarged connective tissue) caused by facet joint arthritis on both sides, which has resulted in acquired central canal narrowing (12mm instead of 16mm)
- L5/S1 moderate broad based disc bulge causing an indent in the thecal sac. This has reduced the central canal measurements from the expected 17mm, to 11mm.
- Synovial cysts are on both sides of the facet joints at L5/S1 level.
However, locally – I’m still getting nowhere. My GP referred me to a spinal surgeon to discuss this, but in my area we have a ‘spinal pathway’ – seemingly controlled my physiotherapists. Even having my results upfront, they still want a physiotherapist to carry out a physical assessment, which isn’t going to tell them anything!
After waiting eight weeks for this, I went back to my specialist consultant at the Royal Orthopedic Hospital, who agreed to refer me to a surgeon there, so I can actually discuss my options (if any).
But, it at least explains why I can’t walk far – both the spinal narrowing, and facet cysts would cause this issue and can’t be solved with the hand wave ‘just exercise more’ than doctors love.
English: MRI sagittal image of sacral and dorso-lumbar perineural cysts (Photo credit: Wikipedia)
This month makes it a year since I was finally diagnosed, and brings me up to nine and a half years since my symptoms began.
My lower back has been getting worse and worse, and I believe is the cause for me not being able to stand up long. I went to see my GP and said that I would like to have an updated MRI. My previous MRI in 2009 showed three or four slipped discs, facet degeneration and arthritis. And at that point I could be on my feet for about 15 minutes. I’m now down to under a minute (or so, depending on the day. Sometimes it’s far less, sometimes a bit more if I push myself and ignore the pain.)
My GP said she didn’t have the power to order an MRI unless I was having an operation or something. She asked me when the last time I saw a spinal specialist was, and I said i hadn’t ever. I’ve seen plenty of Rheumatologists and Pain Consultants, but that’s it. She said there was an NHS scheme set up called the Spinal Pathway, and she rolled her eyes and said what a ridiculous name it was. It was for people who had long-term back pain, who hadn’t been able to be helped by their GP. They would assess me – probably by a physiotherapist, and then hopefully send me on for an MRI or to the consultant. Well, that was the plan.
To be honest, as soon as she said a physio was assessing me my heart sunk. I don’t mean to be negative about a whole profession – I know there are good ones out there. It’s just I personally haven’t had a beneficial relationship with one, and I’ve seen many. A physiotherapist was the first person I was sent to when my neck pain started when I was 15. My experience with her was poor. She strapped me up with one of those long brown rolls of plaster you would normally cut to the size of you wound, you know the ones? She cut two strips, long enough to make a massive cross on my back. Her theory was my problems were all due to posture, and when I didn’t sit up straight the plaster would pull and ‘remind me’. After three hellish days, I’d had enough. You know that pain when you pull a plaster off your knee? You either ease it off and make it last longer, or be brave and rip it off. Have you ever had to pull plasters off the length of your back?
I have seen senior physiotherapists, and junior. Spinal Scope ones, and Rheumatological experts. All have given me similar exercise sheets, sometimes done a bit of ultrasound – then when I hadn’t improved in a few visits sent me away saying there is nothing more they can do.
So, when my GP says I need to see yet another physiotherapist in order to see a Spinal Specialist Consultant, I’m not particularly hopeful. In the assessment with the Physio says he doesn’t think it’s that bad as the pain isn’t constant. This isn’t true. I’m just told him it has been constant for nine and a half years. He decides if it was disc problems, the pain would go down my legs. I then ask him for an MRI as we’re not quite sure what the problem is, but he says an MRI should only back up what is found in a physical exam. I fully admit I’m not a doctor – but I guess I just don’t see what looking at me tells him. I then ask about the injections and he declares that I don’t seem to be screaming out in pain for them. This pretty much guts me – who an earth can you possibly tell the amount of pain someone is in? To be frank – I’m offended, and upset.
So I ask if I can see the consultant, and he responds that only 3% of people on the Pathway get to see the consultant. He then puts forward his plan of action. Can you guess?
I’m going into Stanmore for three weeks in January which will include working with a physiotherapist, so I turned his kind offer down. I think I’m going to submit a letter of complaint about his experience. His whole attitude screamed dismissal from the moment I stepped in, and saying I wasn’t screaming out in pain so wasn’t going to offer treatment? It just makes me want to cry.